Friday, March 16, 2007

Book review: Take Charge of Your Child's Eating Disorder

I really wanted to like Take Charge of Your Child’s Eating Disorder, co-written by Pamela Carlton, M.D., who directs Stanford University’s Adolescent Eating Disorder Parent Education and Support Program. I’m a huge fan of the work being done at Stanford by James Lock and nearby at UC San Diego by Walt Kaye. But after reading this, I want to ask them both, “How could you have let this happen?”

Families with anorexic or bulimic children need all the information and help they can get. But for the most part, they’re not going to get it here.

If I’d read Carlton’s book when my daughter was newly diagnosed with anorexia, I would have wanted to shoot myself, mostly because of statements like this: “Full recovery from anorexia is not easy, and many people struggle with ongoing body image disturbances and disordered eating behaviors throughout their lives. Fortunately, with early treatment, your child’s chance for full recovery is likely to be increased.” (p. 9) This leads parents to believe that their child will be dealing with an eating disorder for the rest of her life—which in many cases is simply not true.

In reality, there’s lots of hope for full recovery, especially among adolescents who are treated early with family-based treatment, also known as Maudsley treatment. Nowhere does Carlton mention this as one of the treatment modalities for eating disorders. Instead, she recommends that parents put together a treatment team—a good idea, in and of itself—and says, “The most important thing to remember is you cannot do this alone.”

Actually, you can do this alone, and sometimes you should. A treatment team is great, so long as everyone is on the same page. My husband and I assembled a terrific treatment team, but there were times, inevitably, when they contradicted one another or said just the wrong thing to our daughter. It’s certainly better to have no therapist than a bad one—and the vast majority of eating disorders specialists out there are bad, make no mistake about it. A third of them have or had eating disorders themselves, which tells you something right there.

Throughout the book, Carlton pays lip service to the idea that parents should be involved in their child’s treatment. But she doesn’t actually seem to believe it. Take this example she offers about a 15-year-old, Jinny, in treatment for anorexia. She writes that because Jinny was fixated on her weight, she did not give the girl her weekly weight updates. Fair enough. Then she writes, “But after each appointment, her mother would follow me out of the room with her notebook, ready to write down a weight, promising, ‘It’s okay, I won’t tell Jinny.’ I finally told her this was not healthy for Jinny and her actions were undermining my efforts to help her stop focusing on her weight. We came up with a solution: since she really needed to know her weight progress, I would meet with her once a month to review her progress. Yes, I would share her weight with her, but she had to accept that it would only happen once a month and not at her daughter’s appointment.” (pp. 84-85)

Of course any parent who has watched their child starve themselves nearly to death is going to be fixated on weight. Each pound gained represents another step away from the awful abyss their child has fallen into. The notion that such interest is unhealthy or somehow undermining treatment is both wrong-headed and deeply offensive. I hope this mom fired Carlton and found a smarter, more compassionate therapist who would actually empower the family to help Jinny recover.

Carlton insists that families need to find experienced eating disorders therapists and specialists to make up the treatment team for their child. In my family's experience, the “specialists” were frequently so heavily invested in their own particular take on eating disorders—-and often this was an outmoded and ineffective one—-that they were not able to give my daughter what she needed. A good therapist can be helpful. A bad therapist can do a lot of damage. And you don’t need collateral damage when you’re dealing with an eating disorder.

Finally, Carlton seems to subscribe to the notion that eating disorders are caused at least in part by psychology: “Without appropriate psychiatric help and treatment, eating disorders can become lifelong illnesses. To regain a healthy relationship with her body and with food, your daughter may require long-term treatment, which may continue long after her body is considered medically healed. The average length of psychological treatment is two to three years.” (p. 88)

Actually studies on family-based treatment (the Maudsley approach) show that teens often recover without this kind of intensive psychological or psychiatric treatment, and the recovery "takes": 90 percent are still recovered five years later. Carlton’s perspective gives families the wrong message: that only the doctor can “take charge” of their child’s eating disorder and bring about recovery.

In my experience, and in the experiences of many families I know, the reverse is true: recovery happened when parents were empowered to "take charge" of their child's recovery, often with backing from a truly supportive team.

The best part of this book is the insurance section. Too bad Carlton didn't publish just that. Except for that one chapter, you’re better off reading Help Your Teenager Beat an Eating Disorder by James Lock and Daniel Le Grange or Eating With Your Anorexic by Laura Collins.


Fiona Marcella said...

Hmmmm- it doesn't sound altogether helpful and I shan't be rushing out to buy it. As someone whose daughter's eating disorder has lasted quite a time I'm not necessarily against literature that is realistic about the timescales and difficulties involved but I agree that parents new to this do not need to hear the horror stories, they need helpful hope. As for “The most important thing to remember is you cannot do this alone.” well, not to be tooooo cynical about this, someone who makes her living out of treatment would say this wouldn't she? I know that many families HAVE done it on their own. I'm not saying they should have to. My own (failed) attempt at Maudsley was undermined among other things by the extreme loneliness I felt during the process, but I like the idea of the multi-family approach now being used at the Maudsley itself where other families provide that support as much as the professionals. As slogans go, I'm not that keen on Janet Treasure's words to sufferers "only you can do it, but you cannot do it alone" either although I do see that it is supposed to mean "get your parents involved". In fact my favourite slogan that to me encapsulates the essence of collaborative care is "you can do it, we can help" - pity it comes from a commercial for diet soda!

Goodness, that's nearly as long as the post itself. Keep reading, keep reviewing.

Harriet said...

I agree, Marcella, that the profit motive alters things considerably. I'm sorry you felt so alone when you were doing Maudsley--no one should have to feel that alone.It is without doubt the hardest thing a family will ever do, or certainly one of them. What really burns me up is specialists and therapists who profess to be helping you but who subtly or not so subtly undermine the whole process. The world does NOT need more of that.

Anonymous said...

I don't understand why it's so bad if a professional has had an eating disorder at one period in their lifetime. If they are recovered-which is the likely case, if they've managed to pull themselves through an MD or RD or PhD program-what is the issue with that? They probably are very passionate in healing people with ED's, because they know what its like and are eager to help others recover. Whether or not they use traditional methodology in their treatment protocol is irrelevant, because nobody should be using someone who practices in that manner once they see them a few times. But then they find a psychologist, who has recovered from anorexia or bulimia or whatever eating disorder, and they are willing to assist those people in Maudsley or some sort of FBT.

THis may seem like a ramble but, I'm sorry, I just don't see an issue there if they are going to help without the psychobabble.

Harriet said...

If the therapist or specialist or doctor is in the approximately one-third of anorexics who truly fully recover, it's no problem at all; in fact as you point out it may be an asset. It may help them empathize with the person who has anorexia. And empathy is a very good thing in the right context.

But if they are in the approximately half who traditionally have not fully recovered, who continue to deal with e.d. thoughts and feelings and disordered eating, then I don't want them anywhere near my child. Or anyone's child.

Unfortunately I've seen this pretty close to home: pediatricians who are very close to anorexically thin themselves setting target weights that are way too low for teens in their care. Therapists who clearly have eating issues themselves unconsciously (or not) setting up "good food/bad food" dichotomies for their patients. Clinicians for whom being thin is an important part of their lives passing that attitude along (how can they not?) to their patients.

I suspect it's something like the high numbers of pyromaniacs who become firefighters: there's something dangerous, sometimes, about a person's attraction to the field, something that says more about her/his own pathology. And in that case, I really don't want them anywhere near a patient.

Anonymous said...

Thanks so much for a thoughtful review Harriet. It makes me very grateful that I found such good treatment providers when my daughter was ill. Our adolescent medicine specialist who encouraged us in Maudsley therapy and the supportive individual therapist my daughter saw were a big help to us. Sadly we also encountered some not-so-helpful professionals along the way--I've no doubt they were well intentioned but there were a few comments (from a pediatrician and from a psychiatrist we consulted for a second opinion) that created real difficulties.

Helping an anorexic son or daughter is such a hard thing even slightly undermining parents can cause a lot of problems. I hope that ED professionals can recognize that parents want and need good treatment for their child. They don't reject professional involvement--in fact parents are desparate for good professional care, but they need to be supported. If parents and experienced professionals can work together it's possible to make great strides in a short amount of time--limiting the damage done. Thanks for pointing parents in the right direction as they search for the best help for their kids.

Anonymous said...

Well, maybe she ought to have called the book Let Me Take Charge of Your Child's Eating Disorder. LOL!

Harriet said...

That's a good one! Subtitle: And Let Me Make a Lot of Money While I'm At It! :-)

Carrie Arnold said...

Or: "Don't Eat With Your Anorexic so I can put mine through college"

Anonymous said...

I appreciate your concerns about this book. But I think we need to be a bit careful about jumping down the throats of professionals who tell us that our excessive focus on our child's weight is counter-productive. Hard as this is to hear, it can be the truth. The harder we lean on our child to recover, the harder the anorexia pushes back; our efforts can inadvertantly strengthen it. Sometimes, when we back off, and focus on the other areas of our relationship with the child, we make room for their own resistance to the anorexia to build. We can tell them how much we love and value them, and how much we think they're worth, without saying a word about food. We can say how angry we are at anorexia for trying to stop them from having the lives they want. We can pay for good therapy. But when we tussle with them about food, the structure of anorexia ensures that they will stop up their ears!

Harriet said...

Dear Anonymous,

Clearly you don't have a clue as to the real nature of anorexia. Too bad you feel obliged to spout opinions anyway.

Re-feeding someone who is starving does not constitute "excessive focus on our child's weight." It constitutes "saving our child's life." And actually your comment is not hard to hear; it's simply absurd. What do you advocate, sitting and watching your child starve? I've tried that. No thank you.

It is true that the harder you push against anorexia, the harder the resistance. This is the nature of the disease. As for backing off and making "room for their own resistance to build," well, you sound like some of the so-called professionals I met at NEDA, who claimed success stories with children who had been sick for 10 or 15 years.

That's 10 or 15 years of my child's life gone down the rabbit hole of anorexia. That's her entire adolescence, which she will never get back. You are, quite plainly, as deluded as someone with anorexia. In fact I can't help wondering if you are yourself a sufferer, or were in the past.

Of course, since you're hiding behind the anonymous tag, there's no way to know.

I know one thing: You are dead wrong about anorexia. If you were our professional I'd fire you in a heartbeat. Your attitude toward anorexia represents the status quo, where only 25% of anorexics recover. Compare that to family-based treatment, where 90% recover. Now you tell me your way is better.

You're nuts.

Anonymous said...

Dear Harriet,

I recently came across this post while reading the Around the Dinner Table forums. I am writing to ask you about the following statement:

"...and the vast majority of eating disorders specialists out there are bad, make no mistake about it. A third of them have or had eating disorders themselves, which tells you something right there."

It seems obvious that a specialist who currently has an eating disorder him- or herself should not be trying to help others with eating disorders. However, it is unclear to me why the fact that a specialist HAD (i.e. no longer has) an eating disorder also "tells you something right there." Are you suggesting that it is inappropriate for an individual who has recovered from an eating disorder to become an eating disorder specialist?

I am curious because I myself have recovered from an eating disorder and am considering a career as an eating disorder specialist.

Thanks in advance for a response!

Harriet said...

Hello anonymous,

I think if someone has truly and fully recovered from an e.d. they might make a very empathetic e.d. therapist.

The trouble is that a lot of people don't fully recover. They sort of partially recover--maybe they're quite functional but still have their own food "issues," or a residual phobia about fat or fatty foods, etc. I've seen this a few times. If there's any muddying of the waters at all it's not a good thing.

At the minimum I think a lot of time should go by between recovery and training as a therapist.

I wish you well--